April 15, 2025 "Seizure #21"

Rayden woke this morning around 2am screaming in pain from a severe headache. I ran to his room to find him holding his head rolling back and forth. He was aware enough to tell me his head hurt bad, then he started gagging on excessive saliva. I rolled him to his side while Michael retrieved the rescue medication from the bedside table. By the time he opened it, the attack was over. I'm afraid to think that this could have been 'after' the actual seizure and we slept through it. His watch didn't alarm us. I laid with him the remainder of the morning, of course.

We got up and went on to school. Rayden slept on the sofa in his classroom for 1.5 hours.

I sent his epileptologist a message and she suggested I contact his neurosurgeon because it sounded like a shunt malfunction. I quickly replied that he has gone through 6 shunt malfunctions in his life and they DO NOT present like this at all. Dr. Elton agreed with me.

She then changed her tune and replied that it could be a shorter or milder version of his previous seizures. She suggested continuing to monitor him for now. If it occurs again, we could up his medicaton lacosamide (Vimpat) from 12 to 15 mL.
 
She also suggested thinking about planning a stay in the UNC Children's hospital to record the seizures by decreasing medications slowly. This would be a 3 to 7 day hospital stay.